“I’m active, a little bit crazy, but I’m mostly fun,” Sydnee Murphy, 8, said when asked to describe herself.
Sydnee is a second grader at Westside Elementary School and her favorite activities are practicing basketball, football and gymnastics. She also loves to read, especially “The Boxcar Children” children’s book series.
“I also have 115 AR [Accelerated Reading] points and the goal for the entire year was 100 so I am already ahead,” Sydnee said.
A seemingly normal life from the outside, Sydnee is an 8-year-old living with sickle cell anemia, a disease that causes her red blood cells to contort into a sickle shape, leaving her body with a shortage of healthy red blood cells.
Sydnee specifically suffers from hemoglobin SS disease, the most common and severe type of sickle cell disease. Hemoglobin SS disease occurs when a child inherits copies of the hemoglobin S gene mutation from both parents, and Sydnee has been living with it since she was three months old.
However, Sydnee is doing more than battling this disease — She is using her voice to spread awareness.
In September 2020, during National Sickle Cell Awareness Month, Sydnee thought of a creative way to share her health journey and express gratitude.
“I decided to make videos and share what sickle cell had meant to me and to thank the nurses and doctors,” Sydnee said.
Sydnee’s mom, Dasaisha Murphy, recorded a video of Sydnee every day for 30 days. Her goal was to bring awareness to her mom’s Facebook friends about the sickle cell signs and symptoms, and provide a look into her everyday life.
At 6 months old, Sydnee started having “crises,” or painful episodes that block small blood vessels that carry blood to different parts of the body.
Crises come at random times. One year, Sydnee was admitted three times in four months. Before 2020, the crises came every couple of years.
“Every year is unexpected,” Dasaisha said. “Sometimes she has gone an entire year without any hospitalization.”
Sydnee says while she is in the hospital for periods of time, she tries to act like she is at home to feel comfort.
Sydnee goes to UF Health Shands Children’s Hospital every three months. Physicians and nurses test her blood, check her temperature and, on rare occasions when she is not feeling her best, send her to the infusion room to receive IV treatments.
“In some of the videos I talked about blood crises, medicines I take and things like that,” Sydnee said. “People were curious and would post questions in the comments for me to answer.”
In a matter of days, the videos had received over 100 likes and countless comments. The Murphy family took a picture wearing red sickle cell ribbon pins and posted it online.
“After I got out of work, I had a lot of co-workers wanting to buy our pins,” Dasaisha said.
The Murphys created a model of the metal pin to sell for donations: a maroon ribbon representing the sickle cell awareness emblem. The ribbons sold from $1 to $2 and the family created a GoFundMe page for anyone who wanted to donate directly to the cause.
The family ended up selling 100 ribbons and raising over $1,000.
Sydnee chose to donate all the funds she raised to the Child Life Program at UF Health Shands Children’s Hospital. She asked for a wish list from Tramekiah Coleman-Spradley, a volunteer services coordinator for the Child Life Program, and spoke with Amy J. Wegner, director of the Child Life Program, to facilitate all of their donations.
“I wanted to give back to all of the nurses and doctors for all that they have given me,” Sydnee said.
The Murphy family purchased markers, games, tie dye kits, coloring books and other various toys.
Dasaisha described a time a few years ago when Sydnee was released from the hospital after one of her crises. One of her doctors made a replica of how sickle cell works in the blood stream with macaroni as the sickle cells and buttons as regular cells in a glass jar.
These kid-friendly explanations are an example of why the Murphy family holds many UF Health staff close to their hearts. Anne Dove, R.N., sickle cell and hemophilia nurse coordinator, has been Sydnee’s nurse since she was 3 months old. Dove joined this division in October of 2010, but has worked as a floor nurse at UF Health Shands Children’s Hospital since 1993.
During January of this year, Sydnee had sickle cell in her bone and could not walk for two weeks. She would hop around the house, trying to fight the pain away.
“Watching her go through this and how she doesn’t let herself get down is so amazing,” said William Murphy, Sydnee’s father. “We can look at her and say nothing in our lives compares to what she goes through.”
The Murphys have a “one team” mindset, according to Dasaisha. Sydnee’s older sister, Da’shani, even takes care Sydnee when she is not feeling well.
“Spreading awareness is important so people know how hard sickle cell patients fight,” Sydnee said. “This is so they know how strong we are. We need to be brave.”
Sydnee is a firm believer that when you put your mind to something, you can achieve anything.
“Even [if] you don’t feel so strong, you have to feel strong in your heart,” Sydnee said. “When sickle cell loses, Sydnee wins."